Exhibition shines light on hidden disease
Scleroderma is a rare disease that can cause extreme pain and fatigue, but few have heard of it.
Also called systemic sclerosis, it causes a person's skin and connective tissues to thicken.
Like a "body turning to stone" is how Catherine Thompson describes her disease.
"It is an autoimmune condition, one that people aren't aware of."
She and a group of Palmerston North women are holding an art exhibition to bring the condition to people's attention.
The chronic disease is visible in some patients, who might have problems extending their fingers, for example.
It can also affect internal organs, and cause fatigue, ulcers, and calcinosis – hard lumps of calcium in the skin. Sufferers also face other problems, including acid reflux, hardening of the esophagus and pulmonary hypertension, Thompson said.
"It's deadly, but people don't know about it."
About 1000 people in New Zealand have the disease and at least seven of them lived in Manawatu, she said.
Thompson believes there is huge lack of understanding about the disease.
So, she and the other scleroderma sufferers in Manawatu decided to host an art exhibition at Square Edge, Palmerston North, to bring the disease into the public eye.
Painting, sculptures, teddy bears and mosaics will be on display. Much of the profit from items on sale will go to Scleroderma New Zealand, where it will likely be used for research.
Thompson has created a series of eight paintings that show her emotional journey in battling scleroderma.
"I was one of the hell trips where you get chronic fatigue diagnosis, fibromyalgia – they couldn't find it."
Although the disease does not affect her as visibly as other people, Thompson gets fatigued and excruciating pain.
She has had moments where she could not walk, bend, or put shoes on. "I was in tears when I had to ask someone to put my socks on."
For Palmerston North woman Chris Carlyon, however, the disease affects her ability to bend and extend her fingers.
She was diagnosed with scleroderma about six years ago, a disease she had never heard of at the time.
"I was absolutely petrified. I didn't know what to expect and of course did a wee bit of reading, which made me feel worse."
Both women have faced challenges and had their ups and downs, including having to travel for treatment out of Manawatu, as there was no specialist in the area.
However, they are committed to raising awareness and helping other people who might be suffering from the disease.
Carlyon said the exhibition was a fun way to raise money and support for scleroderma sufferers in New Zealand.
The exhibition runs from June 23 to July 18.